The accidental pressure behind ‘ Positive’

The most common compliment that I receive after maybe only telling a fraction of my story is ‘ You are so positive for what you have gone through and that’s a rare thing. ‘  Thank you.  I hear it.  I receive it.  I understand it.  But I cannot help but wonder if I am on a pedestal from time to time and if the expectation is that I am positive a hundred percent of my days, weeks, months,years. When in all reality, I am equal parts pessimist and optimist. I like to think that I think about all possibilities and probabilities of whatever the life issue is at hand.

Let’s recap a little: 1) I am almost twenty nine year old woman with my immune system attacking itself until there is pain and inflammation in my body.  So even if there is a smile on my face and the inflammation within my body is the best it has ever been, there is something possibly hurting inside of me somewhere 24 hours a day, 7 days a week. 2) Due to accidents and my funky immune system- I am in a wheelchair.  And with that comes the possibility of facing discrimination in some way on a possible daily basis, and when you are Disabled, Discrimination can be accidental or intentional.

Sounds exhausting, right? Those two examples are just the tip of the iceberg really but they are examples of the truth.  It’s not all butterflies and rainbows.  It’s sometimes stress.  It’s sometimes tears that you keep to yourself because you hate crying in front of other people.  It’s years of bottled up anger and anxiety. What for? For all of the years  social injustices you have gone through or your physical self being  in  harms way again and again.  It leaves wear and tear on your heart and mind no matter how positive you are.  However, if you are anything like me, you take a breath, find your center, and just live to the best of your ability no matter what’s going on.

So? At this point ,inquiring minds probably want to know, are things currently on the positive side for Miss Laura? Miss Laura’s response, ” You know in all honesty, this has been a stressful year for my family and I but things are starting to look up.  And with the exception of one missing thing, and those that know me or this blog best will know what that one thing is, I am happy.  I am almost twenty nine and feeling fine. ” And with that I end this post, stay positive folks, or don’t.  Just do what suits you best.

The Disabled Invite Paradox

“ Hey, Disabled and/or Sick friend, Do you want to come over to… ( insert event of choice here) ??? “

The Disabled and/or sick friend asks “ Is the place of said event accessible? “

…( Insert chirping sounds in an awkward quietness and rapid eye movement)…

It is a genuinely fascinating experience when someones knows you or knows of you and your circumstances yet this situation can happen quite frequently.  You are invited to something.  You ask about accessibility and if you are lucky and you are dealing with a person that cares, they will stop and think about it.  But more often than not, the accessibility question is kind of ‘ yeah- yeah’, brushed aside.  Or not answered at all.  An actual example was that I was invited to acquaintance’s Birthday Party and I didn’t receive an answer at all to “ Can I access your house?… Seriously I’ve never been…Ok “  Thus obviously I did not go.

Here’s the thing about this particular issue when it happens.  It is as if the Abled Bodied person is offering a gift and then taking it back in the next moment if the subject is not looked into.  The Able Bodied person may honestly care and love your sick/Disabled friend/family member and they want the pleasure of their company.  Everything comes with good intentions but this is an unintentional social slap to the Disabled person’s face. And unfortunately, if the Disabled person shows up to the event and the place is not accessible enough; there will be upset on the Disabled person and most likely their care giver’s  part but instead of understanding the response is usually rolling eyeballs and questions like’ What is wrong with you? ‘ Making it seem as if Disabled person  is in the wrong, is now the bad guy.  Which no one should be the bad guy in this situation.  It is a just a frequent thoughtless accident that just needs more thought to be prevented.

A more personal side story: My High School Choir was due to have it’s Christmas/Holiday party where we were all to exchange our last secret Santa gifts with each other.  Instead of having the party on School grounds, there was a vote to have it at my choir member’s house.  That house  had about six, maybe more up to the entry way of the house and it was raining.  There was no way that my mother was lift me in my approximately forty something pound chair up a flight of stairs in the rain.  We just left in our up.  The parents in charge tried to explain that there was a smaller back staircase that we could have used instead but the unsafe nature of it all would have remain.  This is an example of the worst case scenario of this.  Because this was school related, this was completely unacceptable.  The party should have just been in the choir room for all inclusivity.  Thank goodness that it was just a school event.  Think how much more painful it might have been if this had happened with friends or family.

So how can all the potential hurt feelings be avoided?

First, stop and think carefully if this is an event you want this friend to be there for.  And then if they would be up to it.

Second, Ask at your leisure.

Then If your friends ask about accessibility and you don’t know the answer. I would suggest going to the place yourself and investigate these three things.

1. Restroom- is there enough space to suit my friend’s needs?
2. Safe Entrance& Exit?  Ramps or stairs? One is easier than the other!
3.  This may be more specific to wheelchairs but smooth floors! I know it is not easy for a family member to push me on grass or gravel.

Next step, if you are having trouble answering any these questions by yourself, give yourself a little more extra time to think about it and ask your Disabled friend to research as well. Thus know your facts about your event location before inviting your Disabled friend or ask your Disabled friend to help find out.

I hope that helps.  This is just an odd social issue to me that happens more than you think and I am all about inclusion not exclusion.  No one wants to be  invited to something and accidentally be uninvited.

Vacation Observations: Better late than never I suppose

As a few of my friends and family know, my family and I were on a miniature vacation.  It was a trip to mainly check on family but there were some extra adventures on the side.      For Example, My Brother and I tried visiting Universal Studios Hollywood for the first time. My mother had been there before.  It was fun.  But the even harder vacation adventures with my life as we all know by now can be the Disability Factors.  This trip was not as upsetting to my needs as other trips can be but I observed a few things.

1.) This is a little new to me but Abled Bodied people are starting to take their sweet time to socialize within the safety loading zone ( that little striped area) of  handicap parking spaces. I have even recently seen a celebrity pose with old school friend’s in a handicap space.  Why? There are better places to have a conversation.  And that area is for my safety and others like me, unloading and loading a wheelchair into a van for example.

2. ) And not so new, To Roughly  quote Stella Young, I feel as if a lot of my job is to discuss bathrooms. My mom and I were in a long line for the restroom.  And when there is a long line.  The rules of the Disabled Bathroom become null and void.  Everyone has to pee. I understand that.  But when a mother sees us and encourages her daughter to grab the handicap stall and then her daughter not only proceeds to use the restroom but also takes extra time to change her cloths.  As this is happening, my mom keeps saying ‘ We’re waiting for the handicap stall.’  The mom of the child comes out of her stall and behaves on the smug side. I am sorry but not sorry, I feel my inner peace maker step aside with this situation.  I am going to start calling it out when people are changing their cloths in the handicap stall.  It’s not ok, it’s not acceptable.  I can guarantee it, Ladies, you think you will be fine, no one is in there, I will take a moment. But I or someone like me is nine times out of ten just around the corner.

3.) Despite that miniature upset, more people were looking out for our well being on this trip.  There was a woman with a Disabled Husband that checked on us while that bathroom event.  I was taking pictures around L.A and this guy was being kind about making sure my view wasn’t being blocked.  And more importantly. The tale as old time, I required a roll-in or wheel in shower for a hotel room. On the way to our Destination, I was promised one by our Hotel.  By mistake, we didn’t receive it.  But instead of having the problem not fixed and instead of receiving rolling eyes, we got help.  The people staying in the room with the roll in shower got up upgraded and Laura got to bathe another day. I am thankful for that.  That was a first at least for many years.

4.) I bet some people may be curious, as a Disabled Person, how was my experience with Universal Studios Hollywood?  Well, my brother was able to transfer me onto Harry Potter and The Forbidden Journey.  Afterwards I was shaking like a leaf the entire day but it was so worth it! I went on a tour bus ride and the tie downs were very good.  And you have to take a shuttle if you want to explore different parks of the park.  I had fun, I enjoyed trying something new. But at the end of the day, with my mobility limitation, ( needing help to be transferred and such) I feel that I have more choices at Disneyland.

Thus at the end of the day, traveling.  Is it easy for someone with my circumstances to do? No. Will I still travel on anyway? Yes, because I love it so. But I hope for a day when it will be easier.  When you make a reservation, may you  be given what you need.  When there is a rest stop, may they always be accessible! May people, if even they don’t completely understand your way of living, watch your back while you’re on the road.  I can be hopeful of that, I think, I know.

The Blunt Truths: Why I am pro living at home vs anywhere else

Hello.   I’m Laura.

“ Hi, Laura! “

Shh this is not the moment for a giggle.

I am an emotionally, mentally independent human consciousness held within a physically dependent shell.  What does that mean exactly? I need help for sometimes a lot of things, sometimes only a few things.  But what are the core things I need help with? Well, I cannot walk or stand on my own so:

• I need help to put my cloths on
• I need help to get into the shower
• I need help to transfer into a restroom
• (At the moment) I can’t cook, I need help reaching, prepping, and cooking
• I need help to drive because I can only squeeze 5-7 lbs in pressure and I am, rightfully if you remember my story thus far, afraid of buses.
• I need help getting in and out of bed
• I even need help to open things

Then once all that important stuff is said and done, I do all that I can myself because I delight in doing things for myself. If something is on the ground, I will pick it up with my toes.  Drop me off somewhere by myself that is on smooth ground, I will wander all around all day and people will wonder how I do so so quickly. I digress.  For the important stuff that I mentioned above, I think it is important to feel safe and cared for by the person that is helping you.  And if that person is family vs a paid care giver, that shouldn’t be something to be made ashamed off!

Thus when people kind of push the idea in your face about why are you not in Foster Care- Assistant Living-that sort of thing…I may I want to look at them funny first but perhaps I should throw the question back to them, why do you think that is the best option for me? I am happy.  I am cared for.  I am surrounded by loved ones and friends and daily opportunities for all sorts of adventures.  And perhaps a point that people may not think about, my Disability check isn’t disappearing to go toward my room and board. Why on earth would I want to drastically change my environment with having all that?

So, a Disabled Woman slowly but surely pushing thirty with all sorts of Artsy career dreams and family dreams, is it right for her to be put into Assistive Living? Not this woman, that’s for sure. And you can suggest it to her until she is blue in the face but she will not change her mind.  But for someone else it may be the answer and that is ok

I suppose a couple points are:  Even if I were to choose to live in Assistive Living, I couldn’t completely do it by myself at the moment.  I would still need the help of a professional care giver that would be a stranger to me and that thought isn’t appealing.  Also, I would stop to think before judging a Disabled person or their care giver for choosing to stay at home.  Able Bodied People even choose to stay home these days by the way. To the naked eye independence may seem lost but sort of like with my last post;You never know whats happening with another human being until you talk to them and ask.

Infantilize me, Captain…Actually No, Please Don’t, Please Stop

So an event that may or may not have happened towards my way today.  My mom and I were wandering around our lovely Saturday Market place when I heard a gentlemen say ” I see you. ”  Later my mom went on to suspect that it was aimed towards me but not only that their was a possibly patronizing attitude along with it.  Now I was the focused on the task at hand so this may not have been the case but I feel this is a subject that follows me around quite a bit.  Frankly to be patronized or condescended to as a Disabled woman, I find it can be a daily occurrence.  From the wide-eyed surprise when I speak quite clearly and fluently in sentences and paragraphs to mentioning my current age.   From The look of shock when I buy something expensive or perhaps discussing something more personal as me visualizing starting my own family. I have seen it all.

Look, until you talk to another human being, you know nothing about them.  I would think that to be the same of Disabled People.  Why assume that the person sitting beneath your gaze is a child? Yes, we usually are all someone’s child but I have said the point the before, not even children like to treated like children.

So why bring this up today? Besides the moment up above that stirred it up again…Because think about the next time that patronizing behavior comes toward a Disabled person that cannot speak but they most likely are as sharp as a tack.  They cannot speak up to defend themselves immediately and I am sure that behavior and that thought hurts them most of all.  As for me, I usually say or do nothing although I would love to give a good verbal smacking upside the head every once and a while.  But the trick is, at the end of the day you can’t.  You have to try to find the balance of being kind but direct.  The person with the patronizing behavior might have no idea that they are behaving that way.  And I am sure the moment that they realize their behavior, they would be embarrassed.  No one likes that feeling.

A tip to Able Bodied People if you are so willing: If you have to physically look down to talk to another human being, Disabled or not, that is ok.  But kindly, remain in good posture while doing so and  please keep your speaking voice at its normal register.   Because then you are just having a normal, comfortable conversation between two good people. And that is something worth having.

Ah! It is good to be back after a long time away.

 

 

 

IF ever there was a moment I would like to take a poll.

A curious event happened yesterday as I was with my family on a shopping trip.  I made eye contact with a young man in a wheelchair and he quickly looked away.  I wasn’t offended but this had never happened to me before.  Guys in wheelchairs usually look at me as if to say, ” S’up? ” But yesterday’s experiences  led me to old thoughts that maybe need to be rediscussed.

I can’t tell you how many time, I have heard ‘ Laura, you should date a man in a wheel chair! That would be so cute!’ or ‘ Laura, you should make friends with this person because they also have R.A! or ‘ Have you ever thought of putting Laura in a home so she would be more socialized?’

No, absolutely not to that last one but I digress…let me to put this kindly and tactfully, because I do think that the intention is meant to be friendly,  not harmful,  but the basic nature of these questions seem accidentally akin to Segregation with a smile on ones face.  ‘ Let’s keep all the Disabled and Ill together! Woo! ” When in reality at the end of the day, if we are going to bond with someone, anyone, you want to start with personality and potentially similar interests. And I have written about these thoughts before but it does lead me to these questions.

1) How many Disabled Men and Women feel pressured by their Family/Friends/Strangers to date other Disabled People?

2) And of that number, how many are interested or not interested?

Gah! I wish could gather a small group to start.  Let’s say fifty Disabled Women and fifty Disabled Men but I don’t know that many people. I suppose for now it is just an interesting and thoughtful social question.

How to conclude this post of day? It is just thought provoking thing to think about and love knows no physical limitations.

‘Inspiration P-What?! ‘

???“ Inspiration Porn”???
What the heck is that? Some people may ask…even though I am a Disabled person I had no idea what this phrase meant. I have heard the term once or twice but after watching an Episode of ABC’s Speechless, it made me want to look it up. First of all, it is phrase that was started by Disability Rights Advocate, Stella Young, in 2012. Secondly, it just basically means that you are calling a Disabled person inspirational solely because of their Disability.
Ah! That makes so much sense to me now.
So here’s the thing. Like I have discussed before. I am have never been offended if people say that I ‘inspire’ them. Here’s why: When the opportunity to tell even a fraction of my story arises, [The R.A, Hip breaking, hip being replaced, ugh, ugh, ugh] the most common reaction is ‘ You have been basically through hell and back and I am surprised that you are not angry, not bitter! You know?!’ From what I have gathered, my attitude is slightly rare for a Disabled Person. ( Stella Young would also say that ramps never get built because of a positive attitude but that’s not the point for now)
Thus that particular reaction is validating to me because I do try to live my life with a positive attitude. Though I do get angry from time to time. I get frustrated. I get sad. If I were to describe of the things that this blog is about, it’s about humanity in its entirety.
But anyway, back to this phrase that sounds weird to me, ‘ Inspiration Porn’ What’s socially acceptable?? To The Disabled Community??? To me, ‘ You inspire me’, does not sound awful. I can think of worse things that can be said to an other human being. I would be sad if someone said it and got ripped into for saying it. To other Disabled People, perhaps it’s an insult.
Perhaps if there is an experience that would be less appropriate that could be an example of true ‘ Inspiration Porn’ It would be if you tell a complete stranger a little bit of your story and then all of the sudden they are attached to you like glue without knowing who you really are. They are giving hugs the next time you meet and you’re like ‘ why are you hugging me? We don’t know each other that well’…yeah, that’s a slight red flag.
What’s the answer then? In my opinion, it’s an intellectual/emotional balancing act. You have to get an intuitive sense of the Disabled person to see if this is a topic they are receptive to. I hopes that helps!

 

Then there was Lucy

To Start: I thought I would share a picture of this cooky cutie.  Ain’t she adorable? This is Lucy and this is her story.  Think of this as sort an FYI.

Once upon a time, when unlimited texting was too pricey and cell phones were not quite smart yet: my family and I settled on the idea that I should try to have a service dog.  If ever I were in trouble in the middle of the night and if no one could hear my cries, there goes doggy to the rescue.  It seemed a good idea at the start.

Firstly, We called around, in my memory it seemed like for months on end, but perhaps it was a shorter time period.  One place would train dogs very heavily and properly but at the same time, they weren’t used to being around cats.  Which we had many of at the time. Next please.

Secondly, One place did an interview type process of said family seeking said service dogs.  I believe their prices were a couple thousand, maybe more.  And their first attempt was to pair me up with a dog that was afraid of me.   Needless to say, we had to pass on this situation as well.

Lastly, when all hope seemed lost.  Their was a woman in the phonebook that claimed to train many service dogs.  We called her.  Everything seemed to check out.  She helped us pick my dog, Lucy.  We paid her, no refunds.  Although, we were hopeful, we thought this would be what would work the best.  Sadly, shortly after a couple visits went by, red flags started to pop up.

The trainer admitted she had never trained a new pet before.  Her previous animals trainees were long kept pets.

She said that dogs can only train for 5 seconds a day which after talking to other trainers is not true at all.

She spanked poor Lucy right before our eyes!

No more ‘ training’ from you! We said.  Never touch our dog again.

We had another trainer come in, thank goodness, for basic behavior training. It wasn’t too long before we realized though that instead of my friendly neighborhood service dog; we have a happy, goofy family pet. Beloved by all.

What did my family and I learn from this? If you want a service dog, research is key.  1)Don’t let someone take thousands of your dollars without knowing the full background of the place, people attempting to provide the service dog.  2) Regulations on Service Animals vary State by State.  Oregon, and keep in mind, I think this was about ten years ago when our story took place, had no regulations.  Maybe things have changed for us, I don’t know.  But supposedly, one state will just let you put a vest on your dog and thats it.  Other States, the dog has to be properly trained to behave in public.  And there may be some licensing involved.

Even now, as recently as a couple weeks ago after I started writing on this post.  My parents ran into a gentleman that is seeking to receive a therapy dog and has talked to over Eighty Organizations to find the correct fit for himself!  That shouldn’t have been the case at all in my opinion! But from what I hear this sort of service is becoming more accessible to people. Good.

Personally though, I never want to go through the aggravation of attempting to have a service dog ever again.  Family pets with basic training works just fine for me.  However, if you want to go through with finding a service/therapy dog/animal. Research, my friends! Because honestly, I feel as if this a potential subject that someone could easily take advantage of a Disabled person when they are genuinely looking for a furry companion that could also be a helper. And that is just not right to me.  So be aware.  If you are looking a for service animal, good luck!  And if you have an animal that is just meant to love and be loved, that is ok too,

Looking for Glitter among shattered Glass

An Anecdote from my vacation that I haven’t shared yet.   The day after the broken tempered glass incident on the bus was supposed to be our adventure day around Vancouver.  However to our dismay, my mom had a severe Vertigo based headache that we were eventually able to find someone to treat her.  I stayed in our hotel room while my step father took her to Acupuncturist that happened to be an MD as well.

I get a message a little while later.  The appointment is taking a little while but we are getting a prescription, that sort of thing.  The longer I am alone, the more I start anxiously thinking.  IS this is how its going to be for the entire vacation is going to be? Accident upon a accident? The nerves rose even higher after my mom told me that Doctor was reluctant to let her board the ship.

Did my Birthday Vacation crumbling into devastation? No, of course not, it didn’t.  But I was a afraid for awhile that it would.

The next morning comes.  It’s the day when we’re supposed to board.  My mom was feeling better.  Fabulous.  I wanted to dress up pretty in this red dress that I bought.  I was determined to feel beautiful even though for the first time in a long time I would be mistaken for a child instead of my nearly twenty eight year old self.  Then water and make glitter spilled all over my new dress.  If that wasn’t the icing on the cake that could have potentially sent me into tears, I don’t know what else could have been.

And yet, as it turned out, the Dress dried freakishly fast and I sparkled the entire day.  The moment we boarded, I breathed a sigh of relief.

What is the point of this story?

Well, time has moved on, the vacation ended months ago and now a sense of uncertainty in the air.  Heavy thoughts are weighing on my mind.  You see, not only do I have an autoimmune Disease and all the adventures that go with it.  I have a mom with on and off again heart problems.  I have a step-father with a history of Cancer.  I am certain I have other family members with all sorts of other potential health problems. I can’t help but worry from time to time if one more medical devastation comes around, will that be it?

Heres the thing though,  I cannot and will not give in to fear.  The way I think of it most times.  I have to look for the silver lining somehow.  I have to put on a brave face.  I have to carefully look for the glitter among the broken glass.       And with a heart full of gratitude that for now my family and I are well enough, I will do just that.

Laura Mathans or Laura Elizabeth Mathans 2017 ©